#92795 03-29-2009 10:33 PM | Joined: Mar 2009 Posts: 3 Member | OP  Member
Joined: Mar 2009 Posts: 3 | Hi, I am new here. My mum was diagnosed with oral cancer stage 1 in her cheek lining (right side) back in January 2009. She is over at UCSF and was scheduled for surgery as soon as the could fit her in, which was 6 weeks later. They removed the cancer from the cheek, 20 lymph nodes and a small section of her jaw.
One of the lymph nodes contained cancer, the rest did not. Besides that the doctor said he would have prefered that the margins were wider on her test results. Radiation is an option, but the tumor board did not advise it based on her results. I am so worried and confused and in desperate need to find some answers. My main question what is the likelihood as the cancer spread to one lymph node that it could spread to somewhere else in the body?
Thanks for your help.
Nina | | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Nina
Good question,[quote]I am so worried and confused and in desperate need to find some answers. My main question what is the likelihood as the cancer spread to one lymph node that it could spread to somewhere else in the body?[/quote] but no good answer. Statistics never tell the story nor can they be applied to any one individual
You need to strong for you Mum and worrying won't help either of you. My GUESS (based on Stage 1, tumor board no on radiation, only 1 out of 20 nodes with Cancer) is that the likelihood is low. Read my signature line to see how aggressive my cancer was/is and it has not "spread elsewhere"
No guarantees, just HOPE and FAITH.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | It never hurts to get their opinion reviewed by a new set of eyes.
That said, radiation is the ultimate weapon in the arsenal to kill this cancer and it causes the most far lasting, even permanent, life altering adverse side effects. Being able to use it twice is also very limited so some evaluations lead to the recommendation to hold off and see if the initial Tx was sufficient to kill the cancer.
Unfortunately there are no guarantees with this cancer as we have seen it all on this site.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | [quote=ninakelly] My mum was diagnosed with oral cancer stage 1 in her cheek lining ...
One of the lymph nodes contained cancer
Nina [/quote]
Once the cancer had spread to a lymph node isn't it considered at least stage 3?
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Probably staged before they found the positive node. As far as I know, with the exception of the Nasopharynx region, any nodal involvement is staged at least a 3.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2009 Posts: 11 Member | | Member
Joined: Feb 2009 Posts: 11 | I would suggest getting a second opinion if you haven't already done so.
I'm debating over radiation and nothing was in my lymph nodes, in fact, they got clean margins but due to the depth of the tumor, the doctors are on the fence and so am I. My cancer was in the lower left tongue so while not in the same place as your mother, I would still get some other opinons if a node was positive.
SCC T1N0M0 Floor of mouth (under tongue) - Surgery 2-13-09. Forearm free flap with partial glassectomy and left neck dissection. Clean margins and nodes! Contemplating radiation. Non-smoker/casual wine drinker
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | David staging is decided by the size of the tumour i think not the nodal involvement.Robin was T1N2cM0 and was staged at 1 because the primary tumour was just 1cm .His secondary tumour however was 5cm. I am sure i will be corrected if i am wrong but that was my understanding of how it works.
Partovis sitting on the fence is NOT an option with this cancer you will likely get splinters in your ass,so jump down off get another opinion.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Liz,
My RO gave me a book they use with patients (and plenty of colored glossy pictures) entitled Oncology Counseling Folder - Head and Neck. In this book is a Staging Guide chart for all regions of the Head and Neck and their respective Staging Guides 0 thru IVC with a corresponding table showing each Stages' T, N, M values. None of theses charts show nodal involvement being staged less than III. You can be staged a III without nodal involvement but that was not the question I thought I was answering.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi David
i thought the statement was if nodes are involved it has to be at least a stage three lol.i just know that Robs doctors staged him a 1 even though he had a large node.I am sure no expert so i will concede to the "old timers"superior wisdom lol
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Ok let me rephrase this...in this book in any region of the H & N if there is nodal involvement the minimum Stage is a III (with the sole exception of the Nasopharnyx region where it is IIB) regardless of what the T or M is. No where is nodal involvement ever a Stage I.
Maybe there's a different book across the pond?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I found this very helpful site called OCF; check out what OCF has to say about staging and lymph nodes, right here under our noses, so to speak: http://www.oralcancerfoundation.org/facts/stages_cancer.htm
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | Liz and David, http://www.oralcancerfoundation.org/facts/stages_cancer.htm Pop quiz tomorrow!  Whoops! Pete beat me to it!
Last edited by RPCV; 04-03-2009 05:31 PM. Reason: Not the fastest draw in the West!
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Nina,
Welcome to OCF. As you can see, you will always get answers to the questions you ask and then some!! No doubt good information.
That said, I would highly suggest getting a second opinion. Have you done that yet?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Well David now we know.shame on us lol.
I first read that page more than 2 years ago and it hasn't changed that i can see.Perhaps i should cut and paste it and send it to Robs doctors for future reference,although i can see why they staged him as 1,because his primary was 1cm and his secondary was not in a recognised area of spread being on the opposite side and even post dissection and pathology ,they couldn't find out how it had got there as all 67 lymph glands but the affected node they removed were clear of any cancer.
Last edited by Cookey; 04-04-2009 12:01 AM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 |
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | U 2 have me rollin. Not like a ball tho. More like a lopsided toad.. That's not a pretty site.LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Liz,
Thanks, as I assume that was some term of endearment.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2009 Posts: 3 Member | | OP Member
Joined: Mar 2009 Posts: 3 | Thanks for your input. I did find out after speaking directly with one of the doctors that it is stage III only as it was in one lymph node. Fortunately it was in the center of the lymph node and was very small. It had not gone anywhere else. The doctor, head surgeon and oncologist doctor at UCSF don't feel radiation is advisable, although it is an option for my mum if she chooses to pursue it. They feel it is likely that the cancer was contained and then removed. After speaking with the doctor, I feel much better. Thanks again for your advice. | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Stage III, humm one of our very smart posters said that....lol
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | One of our very smart posters with a head so big even my elephant couldn't bounce off it lol
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 |
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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